Ask The Labor Nurse: Should I Get Genetic Testing?

Genetic testing made headlines last week when Angelina Jolie announced her double mastectomies. Knowing she carried a gene that dramatically increased her odds for developing cancer, she chose to remove both breasts preventatively. Would she definitely have gotten cancer if she hadn’t had surgery? No. Does her surgery guarantee she won’t get it? No. What does this have to do with pregnancy? Plenty. Genetic testing is a routine part of prenatal care.

I’ve recently read a couple books I think do a great job presenting the positives and negatives of genetic testing. Emily Rapp’s memoir, The Still Point of The Turning World, is a heartbreaking read about her son’s life and death with Tay Sach’s disease (a rare, fatal genetic disorder). Emily loved her son and treasured the few years he was alive but she’s completely honest when she says if she knew during pregnancy that Ronan had this disorder, she’d have had an abortion. His condition was painful, debilitating and she would have spared her son if she’d known. She’s become an expert on the parental side of gene testing and a strong advocate for the plus side of having it done.

I also recently read Lissa Rankin’s newly released New York Times Bestseller, Mind Over Medicine. Lissa is an OB-GYN who took the off ramp from a stressful, frustrating career delivering babies in our current high-intervention, defensive American birth culture. She left because she became ill and unhappy, knew the stress was killing her and because she couldn’t continue practicing in a climate so oppressive for both doctors and patients.

Once she got her health back together, she started researching how our thoughts and lifestyles influence our health both for better and worse. She did deep research on thousands of studies that demonstrate that placebos promote healing because patients “think” their way to health and believe they’re taking something that will cure them.

Lissa believes that while genetic testing has a valid medical role for many people, it isn’t necessarily the final word in determining who gets sick and who doesn’t. She references Dr. Bruce Lipton, PhD, a stem cell biologist and internationally known expert on the molecular mechanisms controlling cell behavior. He’s kind of a big deal in the genetics world. After a solid career believing that genes were responsible for what ails us, he made a big discovery.

Genes are activated by the environment they live in. If they live in a healthy, stress-free environment – they act one way. If they live in a toxic, stressful environment, they tend to activate their disease potential. But when the environment includes healthy thoughts, prayer, meditation, nutrition, and all the things we attribute to good health – genes act healthy. It was Dr. Lipton’s crazy idea (researched, studied, documented and published) that we influence our genes as much (or more) as they influence us that led him to write the bestseller – The Biology of Belief.

Physicians, scientists, spiritual leaders and average Joe’s like me are understanding that the ideas we plant in our minds influence, benefit and sometimes destroy our health. If we believe it’s our fate and genetic predisposition to get a specific disease, chances are good we’ll get sick. But what if we don’t know? What if we decide not to do genetic testing? What if we never plant that seed in our minds or our newborn’s?

Pregnant woman can opt for different levels of screening and diagnostic genetic testing. One woman I know found out through genetic screening (which she didn’t know she was optional) that her child had a higher than average chance of having Down syndrome. She declined further testing because she didn’t want to terminate or cast a shadow over her pregnancy even if it was determined her child definitely had Down syndrome. Turns out, her baby was born he was 100% normal.

Another woman went through extensive diagnostic testing after early screening indicated a problem. When her final tests couldn’t determine for certain whether her baby had a rare anomaly (even gene testing can’t always provide 100% certainty), she chose to terminate. She knew what was best for her and didn’t want to take that chance.

Should you do genetic testing? That depends on how much you want to know in advance, but I recommend you think it through. It’s 100% optional and 100% your decision.